I have returned from the PCRI conference in LA. As the prior conferences, it was an excellent meeting designed for us, the nonprofessional. The range of speakers and the topics covered all had immediate and direct implications for us survivors, our spouses and partners. Over the course of the next few weeks, I am going to be describing some of the presentations and sharing the good news that many of these lectures imparted.
For me there was a major spoiling incident at the conference, which left me very surprised and extremely disappointed. I have been writing about the petition to make prostate cancer a national priority (www.prosatatecancerpetition.org). Getting this petition signed by tens of thousand people needs to be common goal of all of us who have been touched by prostate cancer. Yet, our lack of action has translated into our inability to obtain the numbers of signatures we need on the petition.
Compounded by the lack of advocacy men display for them self is the general inability of many prostate cancer groups to join together and get behind the actions of the other prostate groups, despite the value to the over all community. This is a statement of absolute fact. There is not one group that I am aware of has not been guilty of this crime.
The prostate cancer petition, if successful, will benefit all men with prostate cancer as well as their families. It also has the potential bring about increasing funding for other cancers besides just prostate cancer, which is a good thing. So why would any prostate cancer group not actively support the petition drive? I do not know the answer, but I can say that PCRI fell very short this weekend.
Earlier in the week, I spoke with PCRI and told them that I would be at the conference and was planning to distribute hard copies of the petition to the conference participants. I asked if they would be willing to announce, during the conference, that the petition was being circulated and people should consider signing.
My request was denied, but it was suggested that I approach some of the exhibitors and ask them to allow me to put copies of the petition on their tables. It was also suggested that I prepare a slide about the petition that would then be displayed on the viewing screen in between speakers. I thought this was a fantastic idea, I appreciated the offer and sent two different slides either of which could have been used by PCRI.
Neither of the slides was ever used and no speaker or the moderator made any mention of the petition! The petition and its goals were completely ignored by PCRI!
The last speaker on Sunday, Dr. Howard Soule, PhD spoke about “New Discoveries in Prostate Cancer Research Arena.” He was a fantastic speaker who talked about the current efforts in prostate cancer drug development. He shared with us specific information about the most current research efforts in prostate cancer. He closed his presentation by urging everyone present stand up and be counted in Washington, to get more funding for prostate cancer research.
His message was right on target with the message in the petition, but even then, the moderator failed to make any mention of the petition that was circulating on the floor that very moment. I do not understand how such an important prostate cancer advocacy and education group could have ignored the petition.
We need to figure out how to work together if prostate cancer is ever going to receive adequate funding.
Skip Lockward from Zero (formerly National Prostate Cancer Coalition) sent an email this morning to a number of advocates. I hope that Skip will not mind, I am going to reprint it in part, as it speaks directly to the current funding problems we are experiencing.
“Tomorrow I will send out a much more detailed explanation of the situation
but suffice to say, the current information coming from the House is that
the prostate cancer dollars for CDMRP will remain at last year’s level.
With the economy, two wars and the price of oil, one could be forgiven for
seeing this as a minor victory. However, our friends in breast cancer once
again were bumped-up by about $12M and our friends in ovarian cancer also
received a significant increase of about $15M. (Kevin Johnson, my SVP of
Public Policy, will have the latest situational updates and exact dollar
amounts for you tomorrow) With some additions and alterations to the
peer-reviewed program the net effect is that every cancer and disease
covered by CDMRP received an increase in funding except for prostate cancer.
My staff has been hearing for months that one of the primary problems
surrounding prostate cancer is that the various House and Senate offices
never hear from prostate cancer patients, doctors and families in sufficient
numbers to warrant intervention. With more than 2M men living with prostate
cancer in the US it is ridiculous that our respective organizations are
incapable of producing enough email, phone calls and visits to Congress to
expand the programs on which we so heavily depend for finding a cure for
this disease. If we don’t not respond in some fashion, we are in effect
acquiescing to the actions of the House and what will most likely be the
actions of the Senate as well.”
What is it going to take for us to have our voices heard? Our first step needs to see our prostate cancer groups decide to work together for the common goal we all have. We need to raise our voice; we need to be present and to testify to the world about the plight of prostate cancer survivors. We need to out grow our macho maleness and advocate for ourselves.
What are our options, to continue to pee in our pants and suffer quietly from our inability to have erections, that is what we have left. We have nobody to blame but our selves and our organizations.
Joel T Nowak MA, MSW